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Deciding about research for others: normative, empirical, and legal accounts of proxy decision-making for research and the development of a decision support intervention

Shepherd, Victoria 2019. Deciding about research for others: normative, empirical, and legal accounts of proxy decision-making for research and the development of a decision support intervention. PhD Thesis, Cardiff University.
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Abstract

Research involving adults who lack capacity to consent, and who therefore require alternative decision-makers, encounters a number of ethical, legal, and practical challenges. Legal frameworks in the UK require proxy or surrogate decision-makers to make decisions based on what the person’s own wishes and feelings would be. However, this may be difficult to determine or can be unknown. The aim of this thesis was to explore the ethical basis of proxy decision-making, how decisions are made in practice, and the support needs of families acting as proxies. This thesis examined the context within which decisions are made through systematic reviews of current evidence and normative literature, and empirical research undertaken to address the evidence gaps identified using survey and content analysis methods. A qualitative study explored proxies’ experiences and established their decision support needs. The findings show that proxy decisions are contextually dependent in practice, founded on relationality and trust, with proxies aiming for authenticity rather than accuracy. Current legal frameworks and ethical accounts do not reflect the duality of the proxy’s role and their obligations to both represent the person’s preferences and interests. An alternative account of proxy decision-making is proposed which moves away from an autonomy and consentbased paradigm, and towards an approach centred on respect for persons. Some family members acting as proxy experience an emotional and decisional burden and may benefit from decision support. A complex intervention was developed to support informed decision-making, which focuses on the proxy using their relationship and knowledge of the person’s own values and preferences. This thesis extends ethical understandings about the basis for proxy decisions for research, identifies areas of divergence from the legal frameworks, contributes new empirical evidence about real world decision-making, and provides a mechanism by which family members can be supported when faced with often difficult decisions.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Medicine
Date of First Compliant Deposit: 11 November 2019
Last Modified: 12 Nov 2019 11:51
URI: http://orca.cf.ac.uk/id/eprint/126706

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